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Electronic Health Reforms Left Babies Behind

With most newborn screenings still done on paper, there’s a born-again push to improve and speed up the process for detecting health problems.

For the most part, the days of file cabinets crammed with patients’ paper health records are gone, especially in hospitals. Electronic health records are taking their place. While electronic health records are imperfect, they’re beginning to help doctors treat patients more comprehensively. But as the public health community is well aware, there’s one area that’s been left behind: screening tests for newborns.

Created in the 1960s, the newborn screening program is used to check a baby’s hearing, test for congenital heart disease and, with a few drops of blood from the infant’s toe, look for a range of serious genetic disorders. The bloodspot is put on a card alongside handwritten information about the infant, including time of birth and when the child was first fed. The card is then sent off to a laboratory where a technician enters the data and tests the blood sample.

There are many problems that can arise from this process, which include entering incorrect information or simply taking too long to process the blood sample. In 2013, the Milwaukee Journal Sentinel reported that over the previous year at least 160,000 blood samples had arrived late at labs across the country -- an occurence for which  hospital staffers were rarely reprimanded. The paper also found that many labs were closed over the weekend, so the parents and doctors of babies born later in the week often had to wait longer for results. For a newborn with an undetected disorder, a delay of even a day can be a matter of life and death. 

The Journal Sentinel’s investigation has spurred many who work in pediatrics to action, with several states and hospital systems working to streamline the screening process and bring it online. While every hospital has a different approach, one state that has made considerable progress is Minnesota. Its health department’s public health laboratory has focused on implementing a system that pulls the newborn’s demographic information from an electronic health record. The next phase of the project is enabling test results to be sent directly to the health record. “We’re trying to eliminate the manual-entry side of the process,” says Amy Gaviglio, a supervisor at the state’s public health laboratory. 

So far, 75 of the state’s 89 hospitals have adopted the new electronic system. It hasn’t been an easy process, however. While hospitals were excited about the system, says Gaviglio, “nursing time is valuable, and the only real time we could train them on these new devices was during shift changes, which occur at really inconvenient times like 5 a.m.”

So why were newborn screenings left behind in the push to go online? “There are hundreds of workflows that are not out-of-the box ready for electronic health vendors,” says Joe Schneider, a pediatrician who recently retired as chief health information officer at Indiana University Health. “And if you’re a health executive dealing with diabetes, hypertension and cardiac problems, newborn screenings are relatively small when you’re thinking about dollar impact.”

Pediatricians have to push state health departments to step in to streamline the process, says Schneider, who now consults with Indiana University Health on its efforts to bring newborn screenings online. The university is currently focused on consolidating 31 workflow steps into 14.

Gaviglio is optimistic about the progress that’s being made. “We’re starting to see what implementation looks like, and there’s now this spirit of collaboration from people in this field,” she says. “We’re on the cusp of things finally coming together.”

Mattie covers all things health for Governing.

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